Momma Fran: daily update; we're close to coming home

Hello Everyone
We are closer to coming home. Marqus has an amazing spirit it is not easily shattered.
Everyday we step out on faith .
In order to understand this post I have to share a story.
Many years ago when Marqus was small and we went to Loyola Kevin would go in the playroom and occupy himself while we attended to Marqus .
We were so grateful for the volunteer grandmas that helped.
The kids whose siblings had cancer were invited to a group to discuss their feelings
No such group existed for siblings of kids with Sickle Cell. Kevin asked why they didn't include him just like Kevin's son asked why cant they take away Uncle Marqus Sickle Cells.
Even though Kevin was young he felt the pain and sadness and tried in his young mind to understand why his little brother hurt so much why his little brother was on a ventilator why we had to cancel birthdays or miss great America. As a small child Kevin asked me would we love him better when he gets Sickle Cell.
Having a family member suffer takes it toll on everyone but they must understand it is not their fault and they have to have the strength to fight the good fight.
Marqus at five years old told me its was not my fault for his illness or dads fault or Gods fault or anybody's fault. He just told me not to cry and he would be ok.
You see that's why we feel the pain but have to take care of ourselves we have more fight and the book not at the end.
Any chronic life threatening illness has an effect on the entire family unit.
We may seem tougher than most but
We believe what doesn't kill us makes us strong and God gave us what we can handle for a reason.
We have worked together for Marqus ' entire life Sharing so many responsibilities.
Our fortitude taught our kids to persevere.
Marqus desire to be in this world despite horrific pain a brutal war inside that renders many organs dead he has kind words .
The reality that all we really have is time no matter who we are hits home and
Finds itself bringing us to tears intermittently with memories of joy
On top of our minds racing wondering
What life can be without our family unit.
We are blessed to be a family unit I don't care how broken down our house is I don't care what laundry is not folded
We pay the bills but call and try to Harass
Me for something I can't pay now not worried. As long as we are breathing all will be done.
Watching the level of suffering for someone you love does leaves scars ptsd nightmares call it what you want it is a normal reaction.
When Marqus was about 6.5 yrs old he was on a ventilator after breathing 78 breaths per minute and having his first episode of acute chest.
I didn't sleep for months I left the SICU because I couldn't tolerate the sounds of the ventilator.
Feeling anxious is ok it's real it's emotion.
We are just used to not wanting to spread our burden on others because they may be carrying their own crosses that day
We have to remember our joy remember what makes us smile at the end of the day.
Hey husband has this amazing ability to make us laugh. Our pets are comforting
They are keenly aware of our emotions
Family is our circle that cares the outpouring of support means so much to us.
Marqus hs his 3rd birthday with a NG tube in his nose , he just got a new paediatric port a cath and I found a blow up cake. His guest at the Loyola playroom party were nurse med students his brother and anyone who wanted to join us. His 32nd birthday was in the family room at Edward hospital with lots of friend and. family no NG tube
A beautifully working port a cath and breathing well
The cup is more than half full he had a 32 nd birthday.
So emotions are our soul worry about folks who have none.
They are symbols of our passions and zest for life
Be sure to reach out we don't do that often sometimes we are silent sufferers
So as not to burden others.
At the end of the day all we have is time
Please don't miss the sunshine , a real smile not an emoji , ride a horse , pet a dog cat , laugh, give a hug , make a list , say sorry in person with your voice , look up from your phone. Don't miss your persons that make up your world.
This may be the most I've written in this site in a long time thank you for following
We forgot to reach out and just barrel forward trying to complete all the life tasks and somewhere in between live.
I think this is a reminder to live the life tasks will still be there even when we are not.
One day at a time
One tasks at a time
Marqus says slow and steady wins the race.